I have recently been diagnosed with TN although I have suffered for over 10 years at random intervals. I have had some bilateral and Type 1 and Type 2 symptoms (I think. I am still getting this all straight in my head). Right now I have persistent burning on one side of my face with some aching. Pain meds dull it, but do not take it away. I am on 200mg Tegretol 3 times a day. My question is this. Do you find that pain meds help? I feel like I am going crazy. I had my Neuro doctor recently tell my dentist that my pain could not be my TN because it was on the wrong side. Almost out of pain meds from dentist and I am scared as to what I need to do now? Any suggestions would be helpful.
I have had TN for about 10 years now and I am definitely a believer that it does help, I an on a 7 day patch plus pills for breakthrough and I take it along with tegretol and amitriptyline.Now finding someone to perscribe it is another thing. It is a myth but the medical community believes it doesn’t help. It Can. Look under the face pain tab above and there is some good info on this. As far as being told it is on the wrong side, I myself might look for another Dr. (my opinion). Also good Dr. info on the above tabs. Hope this helps…good luck and hope you can get pain free.
Thanks Mark. I have been reading so much lately and really question what everyone says and how I feel. It really makes you feel like you are going crazy.
You are welcome Kristin,
This disease will sure do that to you and there are so many different symptoms and therapies for relief that they can’t just put you in a one size fits all box. There is so much out there on the web that can be scary and confusing, but this is the best place for getting some straight answers from the people that deal with nothing but TN. Many people find relief through medication or surgery. I am able to work full time and help out at the church a few days a week, so I feel like I have alot of my life back. It was a bit if a rough road getting here but you will be able to as well. Some meds take a bit to adjust to so don’t give up too soon unless you have a reaction to them. I have been to so many places (Dr. s, clinics) and honestly I think I have had my best luck with primary care doctors. Mine perscribes all my meds, which is always a good thing so you don’ get accused of Dr. shopping to get meds. The neurologist/neurosurgeon for me kinda fell by the wayside when they found out surgery was not an option for me. Any how kinda rambling now, hope this helped, don’t be scared to ask around here every one its very loving and friendly.
Kristin, It doesn't sound like your symptoms are typical trigeminal neuralgia. Everyone has different symptoms and descriptions of the pain. Many of the attacks are described as more jolting with an electrical component to it and usually in pretty specific areas triggered by certain actions such as eating, brushing your teeth, blowing your nose, washing your face or hair. The type 1 and 2 symptoms may have been in reference to the 1st and 2nd branch of the trigeminal nerve that are affected 1 being the ophthalmic branch (around the eye and forehead) and 2 being the maxillary branch around your nose, upper lip, and cheek). Pain meds seem to have very limited ability to reduce the pain of TN. As you've probably had experience with the best meds for this condition seem to be carbamazepine, Neurontin, and lyrica. I had some success with carbamazepine but little else. Eventually I ended up with mvd surgery which was done in July of this year and has corrected my pain 100%. If I can help answer any specific questions you have let me know. My thoughts and prayers go out for the best for you!!
Your friend in North Idaho,
J
Hi Kristin,
The burning pain you describe is typical for Type 2 TN.
TN 1 is the electric shock like pain with triggers, if you experience both, you’re like me.
As for Tegretol, therapeutic dose usually ranges between 600mg-800mg, but of course we’re all different. I switched to slow release Tegretol XR, this works better for me than regular Tegretol. Maybe something to try? Ask your doctor about it.
There is NO wrong side for TN, I have bilateral TN,
TN1 on my right and TN2 and 1 on my left. I never have pain on both sides at once, never.
Unfortunately you’ll find that many medical professionals are not up to speed on TN, you’ll often have more knowledge than them, it’s frustrating. Really important to find a doctor/neurologist who specializes in TN or is willing to read up to date info and support you in your treatment.
You’ll have to advocate for yourself and perhaps look into another neurologist…
(( hugs )) Mimi
Thanks Mimi. To hear all of this information is such a comfort. You guys rock! Hope everyone has a pain free day today. My thoughts are with you.
I had no luck with pain medications. I finally was taking Lyrica and Baclofen (muscle relaxer) and that finally helped. Prior to knowing that it was TN I was taking between 1000 & 1500mg of vicodin but it did not help at all. It wouldn't even touch the pain. Once I was on the above medications I was able to get periods of time when I was pain free. The side effects of the meds is a completely different story. I did have an MVD in March 2012 and have been pain free since then. Best of luck to you.